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WHAT TO EXPECTGuidance on Key Stages of Dementia
People will almost always need more assistance as dementia progresses, though care needs will be different for everyone. If a person’s care needs cannot be provided for by family and professionals at home, they will need to move to a care home. A team of health and social care professionals will help you know when the me is right for this.Significant need for care and supportDementia is progressive so accepng the right help at the right me helps people live well and families to thrive. Family and friends may see changes in a person’s language, mood, relaonships or character which can be emoonally challenging.The person with dementia may feel increased levels of anxiety or sadness as the world becomes more complicated for them to understand and navigate.Increasing need for care and supportSymptoms including forgetfulness and diculty nding words etc. may be noced.Because these symptoms are not always associated with a physical illness, people usually, wrongly delay going to their GP.Pre-diagnosisFirstly, you should arrange an appointment with your GP. They will arrange tests, including a scan, blood and urine tests and an ECG. A referral is usually made to the Memory Assessment Service or to the Older Adult Mental Health Team.A diagnosis of dementia may be made or another appointment arranged if tests are inconclusive. A diagnosis of mild cognitive impairment (not a diagnosis of dementia) may be given. Medicaon may be advised.The person is discharged back to their GP and other specialist teams if appropriate.Around the time of a diagnosisFollowing a diagnosis people usually manage well but may feel less condent and less able. If you are concerned for the wellbeing or safety of a person with dementia you should seek advice, either from a GP, Social Worker, Care co-ordinator, or from Dementia Jersey.You can also contact the social work team yourself via the Single Point of Referral (SPOR) to arrange an assessment of a person’s needs for care and support.Independent living at homeThere is always much to do following the death of someone you have cared for, and you may experience a range of emoons. It can be a me of deep, painful grief and loss and somemes of relief that a person’s suering or struggle has ended. You will be guided by the health professionals around you at this dicult me concerning what you will need to do. Following the death of a person with dementiaWhat to expectStages along the dementia pathway1. Dementia is an umbrella term usedfor the symptoms of many different conditions that affect the brain. The most common of these are Alzheimer’s disease and vascular dementia, though these and others may aect people quite differently.2. Dementia does not have a linear pathway but like many other life-liming illnesses and long-term conditions it does have a start and an end.3. This pathway considers not just the needs of the person with dementia, but also the carers, family and community and the many services involved in caring for and supporting a person in Jersey.Notes
Dementia Jersey’s team will support a person with dementia through mes of transion.Their family and friends can connue to access Dementia Jersey’s 1-1 and group support. The Counsellor can help you talk through the range of complex emoons you may experience. • GP• Social Work team • Occupational Therapy• Clinical Psychology• Day Care Centre• Community Mental Health team• Professional care agency• Long Term Care SchemeDementia Jersey understands that it may be dicult to know when professional help is needed so we are happy to support you in your decisions as demena progresses.Our services remain available to people with demena and their family and friends.• GP• Dementia Jersey’s Demena Advice teamWhile our Dementia Advice team are not a diagnostic service we can listen to your concerns, oer support 1-1 and in groups, provide informaon and signpost to others.• GP• Social Work team• Occupational Therapy• Speech and Language Therapy• Clinical Psychology • Day Care Centre• Community Mental Health team• Professional Care Agency• Care Home• Long Term Care Scheme• GP• Memory Assessment Service (MAS)• Social Work team• Occupaonal Therapy• Clinical Psychologist• Adult/Older Community Mental Health team inc. doctors and nursesDementia Jersey oers a 1 hour ‘Dementia Friends’ session, a fuller informaon course, 1-1 advice, support groups, the Meeng Place Project for people recently diagnosed, and a range of activities for people with dementia and their family and friends.See our website, sign up for our newsleer, or drop into our oce to nd out more. • GP• MAS’s Post Diagnostic Support Group• MAS’s Cognive Stimulaon Therap Group • Social Work team• Occupaonal Therapy• Clinical Psychology• Community Mental Health teamDementia Jersey connues to oer our full range of support groups, training, events and activities for people with dementia and their family and friends. Practical help and signposting will be provided by your undertaker. Informaon about managing practical and administrative affairs is available at www.gov.je/lifeevents and from Cizens Advice Jersey. Emotional support and counselling is available from Jersey Hospice Care.Dementia Jersey will remain available to support you following the death of a person with dementia. We can oer 1-1 support, counselling and host a support group for people who have been bereaved through demena.Services available Dementia Jersey support services 4. The six colour-coded elements described in this pathway embrace the complexities across the dementia journey from beginning to end.5. The pathway will guide you on the range of support and services available throughout the journey.6. Contact details for all the agencies to which you can self-refer are shown on the reverse of this document. Otherwise, referrals are via a GP or other health professional.
www.dementia.jeDementia Jersey – Who we are and what we doDementia Jersey is a team of highly skilled professionals supported by trained volunteers. The charity provides: • Informaon about dementia and what we can do to reduce our risk of developing demena • Support, advice and counselling for people with dementia and their family and friends • A range of tailored therapeuc acvies and events • Support to family and friends following the death of a person with dementia • Signposng to other sources of help and support available Cizen’s Advice: t: 724942 or freephone 08007350249e: advice@cab.org.jeCommunity and Local Services: (Including Social Security)t: 444444www.gov.je Government of Jersey: www.gov.je Home Care Agencies and Care Homes: Details via Jersey Online Directory (JOD) www.jod.je Useful ContactsMemory Assessment Service: t: 444830Occupaonal Therapy: t: 443068Single Point of Referral (SPOR):t: 444440 e: SPOR@health.gov.jeSpeech and Language Therapy: t: 444500Jersey Hospice Care:(Bereavement Support)t: 285144 e: bereavement@jerseyhospicecare.comLong Term Care: (Social Security)t: 445505e: longtermcare@gov.jeJudicial Gree: (for Power of Aorney)t: 441300e: JGRProtecon@Courts.jeSymptoms of DementiaBecause there are so many conditions of the brain that can lead to dementia, which usually have their own characterisc symptoms, and because symptoms can change over me, and be aected by people’s other health condions, it is very dicult to specify what symptoms a person is likely to have. Generally however, symptoms are likely to be mild inially, but over me may change, or a person may experience new symptoms, which may have an increasing impact on their life. These may include forgetting people’s names or recent events or nding it increasingly difficult to manage the activies of daily living. People may also nd it difficult to manage conversaons, and may become anxious, agitated or depressed, and because our brains control all our body’s systems, dementia can sadly aect a person’s ability to eat, connence and mobility.A Diagnosis of DementiaDementia is an umbrella term for a range of symptoms associated with many dierent condions aecng the brain. Because these symptoms usually develop slowly it may be some me before a diagnosis can be conrmed. To do this, doctors usually arrange for their paents to have some tests, the results of which are carefully considered by a specialist doctor before they can determine a diagnosis. This may be for a specic brain condion, for example, Alzheimer’s disease, or vascular dementia, but if the symptoms are mild, and no specic condion is idenable, a person may be diagnosed with mild cognive impairment (MCI), which is not a diagnosis of dementia.Contact usDementia Jersey de Carteret House Hilgrove Street St Helier JE2 4SLt: 723519e: info@dementia.jeJersey Charities Commission number 42 • Patron Dr Karen Kyd